Local News Blog

by Martha A. Nance M.D.
Medical Director, Struthers Parkinson’s Center
An NPF Center of Excellence

Speak up!  Voice management in Parkinson’s disease

May is Better Hearing and Speech Month, an excellent time to think about your voice. We all know that Parkinson’s disease makes the handwriting smaller, and causes short, shuffling steps. But sometimes we forget about the impact that PD has on the voice. If you have Parkinson’s disease, and have a soft, quiet voice, and if you are of an age where maybe some of your friends are a little hard of hearing, this can make for a difficult combination.

But you don’t have to accept having a small, soft voice. Just as in other aspects of Parkinson’s disease, if you work at it, you can make it better! If you are concerned about the quality of your voice, or if your family and friends often ask you to repeat yourself, then you should ask your doctor for a referral to a speech and language pathologist, or speech therapist. These trained professionals can evaluate your voice, recommend strategies to improve it, and in some cases, provide an intensive voice therapy program.

Not everyone with Parkinson’s disease has the same kind of changes in speech and voice.  Some people have a quiet, breathy, or even whispered voice. Others have a harsh, strained speech. Some have excess saliva, and a wet, gurgly-sounding voice (others have the opposite–a very dry voice, made worse by taking in too much caffeine or alcohol or cough drops and not drinking enough water!)  Some stammer or stutter, while others have difficulty coordinating their breaths with their voice, and run out of air in mid-sentence. For an occasional person in the later stages of Parkinson’s disease, the problem may be more of a cognitive one—difficult coming up with the right thoughts or words to say in the first place.

The correct treatment depends on identifying the problem, which is why an evaluation by the speech pathologist is so important. It is important to remember that other things can affect the voice besides Parkinson’s disease. Issues completely unrelated to Parkinson’s disease, ranging from gastrointestinal reflux (GERD) to poorly fitting dentures and emphysema, can all affect the voice. A speech therapist can help to determine whether your voice problems are caused by Parkinson’s disease or something else—or both!

For those with Parkinson’s-related voice changes, sometimes an adjustment in medications can be helpful (stopping a medication that is drying up the throat, for instance, or adding a medication to reduce excess saliva). Instruction in good “voice hygiene” helps many people (drink enough fluids, sit up straight, get those shoulders back, take a big breath before you speak, don’t eat and talk at the same time…) Many people—but not all—benefit  from a rigorous program to improve voice volume and control, called the “LOUD” program. Struthers Parkinson’s Center, we also have two group activities led by our speech and music therapists, called “Speech Boosters” and “CREATE Singers”, designed for anyone with Parkinson’s disease in the community who wants an opportunity to exercise his or her voice.

The next time you see a speech and language pathologist, stand up, put your shoulders back, take a deep breath, and give a nice, loud, THANK YOU!

Renee Tessman of KARE 11 News reported on new technology that is enabling some people with Parkinson’s disease who have complications while walking. The device is called the Mobilaser, and it was created by the Mayo Clinic. The KARE 11 story featured one patient in particular who is already benefitting from it.

Doug Merfeld is a person with Parkinson’s who is choosing to stay active and move. Making a turn while walking has been causing him to freeze, but the Mobilaser has been helping him improve his steps. The device is a highly adjustable laser light that is attached to a walker or a cane.

“It makes a line appear on the floor as they’re using their walker so they can see that and step toward it as they’re moving; it’s really as simple as that,” said Dr. Bryan Klaussen with the Mayo Clinic.

Using the Mobilaser as a continuous visual cue helps one stream of processing in the brain, which is an area that is slowed by Parkinson’s disease. The cue can help the brain bypass the trouble spot that causes the movement disorders and freezing.

As we discuss the importance of moving, we want to remind you to join us this Saturday, May 12, for Moving Day Twin Cities with Bert and Gayle Blyleven. This annual walk begins with registration at 9 a.m. We still need more support and donations, and we hope to see you there with friends and family!

If you would like to volunteer for an upcoming NPFM event, please send us an email or call 763-545-1272.

Note: NPFM is in the process of  creating a “Medical Corner” section of our website. It’s not quite done yet, but we didn’t want to wait to share this post. In our Medical Corner, you will find blog posts from members of the newly formed Medical Team Advisory Board. We thank Martha Nance, M.D., medical director at Struthers Parkinson’s Center,  for penning another post for us. If you missed her first blog post, check it out here. <es>

Speaking of Parkinson’s disease

by Dr. Martha A. Nance

An apple a day…keeps Parkinson’s disease away?

But only if you are a man.

This is the bottom line of a report published (by X. Gao, et al) in Neurology April 10, entitled “Habitual intake of dietary flavonoids and risk of Parkinson’s disease.” This remarkable study looked at information obtained from two very large studies; the Nurse’s Health Study (80,000 women), and the Health Professionals Follow-up Study (about 50,000 men).

Participants in these studies have completed annual questionnaires about their diet (among many other things) since the 1980s. By this time, 805 participants have developed Parkinson’s disease. Based on how much of what kinds of foods the participants said they ate, the researchers estimated their intake of compounds called “flavonoids,” and found that the 20 percent of people who had the greatest intake of flavonoids had a 40 percent lower risk of developing Parkinson’s disease than the 20 percent of people who had the least intake of flavonoids.

But they only found a significant difference in the study of men—not in the study of women. When they examined specific foods that are known to contain flavonoids, the most dramatic disease-risk lowering effect was for men who had five or more servings of apples per week. Drinking tea, red wine or orange juice did not have a noticeable effect on the risk of Parkinson’s disease. Higher intake of berries (strawberries and blueberries), which contain flavonoid pigments called anthocyanins, also lowered PD risk.

The article was accompanied by a nice editorial by Walter Kukull, Ph.D., which explained all the possible flaws in the research. It is a little difficult to explain why noticeable results were found in men, but not women. Was there a difference in how the research studies were done that obscured any benefits that women might actually be getting from these kinds of foods? Or is there something different about what causes Parkinson’s disease in women? Or is there something else that apple-eating men do or have, that is really the thing that lowers the risk? The researchers checked for things such as alcohol use, caffeine intake and cigarette smoking, but they couldn’t check for everything!

So, maybe these interesting results will hold up in future studies and maybe they won’t. But, short of biting into a worm (!), it’s hard to imagine that eating an apple a day is going to hurt you. Gentlemen, start munching! And, if you get tired of apples, sprinkle some berries on your cereal or ice cream. And ladies, even if we don’t have proof that eating apples and berries lower the risk of PD in women, nobody thinks that it is harmful.

So, go ahead—indulge!

Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.

 

Have you heard the news? National Parkinson Foundation Minnesota was featured in two different local news stories this past week.

Ellen McNamara of KSTP TV reported a story about a local teacher in the Hopkins School District, Elizabeth Ogren, who was diagnosed with Parkinson’s disease at a young age.  Ogren continues to teach elementary students adding valuable life lessons into the curriculum.  Everyone is truly welcome in her classroom.  Ogren stays active biking, Nordic walking and taking Pilates classes to slow the disease progression.

Northwest Community Television told the story of Ken Larson and his family who started the first walk in Minnesota for Parkinson’s disease 25 years ago.  The goal was to raise funds to help patients and families living with Parkinson’s disease live well along with providing funds for research.  Formerly known as the Minnesota Walk for Parkinson’s, Moving Day Twin Cities has grown from a handful of walkers to over 1,000 participants.  Ken’s family continues to honor his memory by volunteering each year to make the walk a success.

The NPFM events are designed to raise funds for education, outreach, respite care and research, and we are always looking for more individuals to help us. If you would like to volunteer for an upcoming NPFM event, please send us an email  or call 763-545-1272.

Note: NPFM is creating a “Medical Corner” section of our website. In that corner, you will find blog posts from members of the Medical Team Advisory Board currently being formed by NPFM. Below is a preview of what is to come. We thank Martha Nance, M.D., medical director at Struthers Parkinson’s Center,  for her williningness to be our first blog post. <es>

Speaking of Parkinson’s
by Dr. Martha Nance

As April and Parkinson’s Awareness Month come to a close, it is a good time to reflect on what we know and don’t know about this disease. It is also a good time to replace the misunderstanding and despair that are often associated with this disease, with hope, optimism and energy.

The National Parkinson Foundation estimates that there are one million people in the United States with Parkinson’s disease, making it the second most common neurodegenerative disease. Alzheimer’s is the most common. About 50,000 new diagnoses are made each year. Based on these data, we estimate there are about 20,000 Minnesotans wrestling with the complex effects of this disease. This number is expected to double over the next 30 years as we age.

Unfortunately, among the primary features of this disease are a slowing of gait, poor balance, smallness of movement and quietness of speech. You don’t tend to see people with Parkinson’s disease in the community and they don’t shout very loudly on their own behalf. It is easy to ignore elderly people who speak quietly and move slowly; they just melt into the furniture.

Even more unfortunately, this sends a discouraging, and incorrect, message to people who have Parkinson’s disease: “Sit. Stay. There’s not much else to be done.”

It is 2012.  That message is simply wrong.

Not everyone with Parkinson’s disease has great-grandchildren or even grandchildren. Although the average age of diagnosis is between 60 and 65, many are in their 50s and some in their 40s. We even have patients who are in their 30s when symptoms begin.

Treatments—medication, rehabilitation therapies, sometimes surgery—combined with a favorable attitude and proper education, have converted Parkinson’s into a manageable chronic disease. Vigorous physical exercise, in particular, appears to stabilize function and preserve brain cells. Parkinson’s disease must be dealt with, and the impact on people’s lives is significant. But, like diabetes and breast cancer, it is a disease that a person can live with, and live well, for many years.

My patients not only WERE amazing people, they ARE amazing people. They work as doctors, nurses, accountants, teachers, mechanics, musicians and business owners. They climb Mt. Kilimanjaro. They win 5K races.  They write books. They participate in Civil War reenactments. And (only in Minnesota) they prepare an annual lutefisk dinner for 50 relatives. One was featured in the newspaper last year for his Christmas light display.  Amazing people. It is a privilege for me to belong to the Parkinson’s disease community.

There is much that we don’t know about Parkinson’s disease—in particular, how to stop or reverse the gradual loss of brain cells. But the patients of today have opportunities not available 50 years ago. They can actively pursue aggressive management of their symptoms and live well for many years after the diagnosis. And if they want, they can be part of the solution. Clinical research is focusing more and more on treatments to address the disease process itself, as well as better ways to manage symptoms. These research studies need participants, advocates, financial support, and an interested and engaged community. Only together can we find better solutions to the problems presented by Parkinson’s disease.

I will talk in future blogs about current treatments, new research breakthroughs. If I am feeling brave enough I may write about areas of controversy or disagreement. But for today, the message is “Parkinson’s awareness.”

If everybody would tell one other person about Parkinson’s disease, invite one other person to the Moving Day Twin Cities walk, or an educational program, or a fundraising event, we would double the energy available to fight this disease!

 

Thank you to the more than 220 people who joined us for the Annual NPFM Soiree last week. The event was a great success and we’re grateful for dedicated volunteers who help build and strengthen our organization. Some photos of the event are posted on our Facebook page, with more coming soon.

In celebration of National Volunteer Week, we want to encourage you to sign up to volunteer for NPFM and help us at one of our upcoming events. Send us an email at info@parkinsonmn.org or call 763-545-1272.

We took time at the Soiree to recognize some of NPFM’s longtime volunteers. Below are the wonderful award winners who were honored for their dedication and commitment to NPFM and the F.A.I.R. Fight against Parkinson’s disease:

  • Luther Amundson, 10-year platinum sponsor & committee chair for the Annual NPFM Golf Tournament
  • Paul Blom, more than nine  years of service on NPFM Board of Directors driving growth and change
  • Eileen Smith, eight years on the board driving communications
  • Jeff Larson, 25-plus years of service both on the board and in leading annual walk
  • Jane Larson, a volunteer many events over the years, including the walk
  • Karin McComb, a fundraiser for the walk since 1997
  • Tammy Selvog, more than nine years in leadership roles for the walk
  • JoAnn Kissell, 16 years of volunteering for the walk, including many years leading registration
  • Jackie Christensen, significant service to the community and more than 10 serving on the NPFM Board
  • Paul, Alex and Bennett Christensen, support Jackie and volunteer at events
  • Jerry Kissel, served as treasurer of the board for 11 years
  • Kris Maser, is in her 13th year on the board providing leadership and legal support
  • Kyle Maser Crist, many years as a volunteer including leading silent auctions
  • Bob Hardman,  a Minnesota Parkinson’s Disease Forum planning committee volunteer and conference speaker
  • Rosemary Hunt, leads support groups and has raised $1,000 a year for five years
  • Maureen Ruble,  leads support groups and a longtime supporter of the walk
  • Barb Green, more than 17 years of leadership on every event and serving as secretary of the board
  • Paul, Laura & Katie Green, help with all NPFM events for 17 years

 

Coming up: Moving Day Twin Cities Walk for Parkinson’s with Bert and Gayle Blyleven is right around the corner. Register now for the May 12 event and stay tuned for more news as the day approaches.

April 11 in World Parkinson’s Day, observed on the birthday of James Parkinson (b. 1755).  Parkinson was the first person to describe symptoms of Parkinson’s disease, and the disease was later given his name. 

In honor of World Parkinson’s Day and Parkinson’s Awareness Month, we ask “what does World Parkinson’s Day mean to you?”  National Parkinson Foundation Minnesota board member Matthew Hanzlik and his mother Sharon Ryan-Olin shared their thoughts on World Parkinson’s Day.  Sharon was diagnosed with young-onset Parkinson’s disease in 2005. 

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Sharon:  “It is an honor that World Parkinson’s Day is observed to recognize this disease and the people who have it.  Parkinson’s is a disease where you can feel like you fade into the background because you cannot always participate in the activities you used to.  I feel very honored that Parkinson’s is spotlighted in April to raise awareness for the disease.

In the coming year, I will be working everyday to maintain my positive attitude about living well with Parkinson’s disease.   I will keep up my good attitude and continue to volunteer to get information about Parkinson’s to doctors to make life easier for people that have it.”  

Matt:  “World Parkinson’s Day is an opportunity for me to celebrate all of those I know living with and affected by Parkinson’s disease – first and foremost my mother, Sharon.  My mom is an ongoing source of motivation and inspiration for me because of her never-ending positive attitude about living with Parkinson’s.  She has taught me to ‘live in the now’ because right now, this very moment, is always something we can control.  My family made our Parkinson’s journey over the past 8 years a lemons-to-lemonade story because my mom wouldn’t have it any other way.

World Parkinson’s Day is a day for me to recognize all my friends affected by Parkinson’s disease.  Parkinson’s disease is tough, but people with Parkinson’s, their caregivers, and family members are even tougher.

In the coming year, I’ll continue doing everything I can to raise awareness of Parkinson’s disease and provide support for people affected by Parkinson’s.  I will always be working towards a cure.  I do it in honor of my mom and my countless other friends touched by Parkinson’s.”

Sharon (middle) is pictured along with her daughter Gina (left) and son Matthew (right).

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What does World Parkinson’s Day and Parkinson’s Awareness Month mean to you?  Leave a comment below in our blog.  

There are Superstars among us!

We know there are many outstanding Superstars in our Minnesota Parkinson’s disease community.  We are thrilled that five of our Minnesota friends were recognized by the National Parkinson Foundation as part of NPF’s nationwide call for Parkinson’s Superstars nominations.

 

Here are just some of the words used to describe our Minnesota Superstars in their nominations.

  • Kevin Burkart:  ”Kevin’s story is unique, and one that goes above and beyond the call of duty for bringing awareness and a spotlight to Parkinson’s disease.  Through the work of Perfect Jumps for Parkinson’s, Kevin has been able to grow a commendable team of volunteers, supporters, and has had a profound impact on those with PD.  Stories have been shared, lives have been touched, and Kevin in all of his admirable bravery, has made each and every one of us grateful and proud of his hard work.”
  • Jackie Hunt Christensen:  ”Jackie is an articulate, passionate, and compassionate advocate for those with PD.”  ”Jackie was one of first people my family met after my mom was diagnosed with Parkinson’s in 2006.  Within minutes, my mom and I knew we had found a new friend – someone who was incredibly warm, welcoming, knowledgeable and absolutely determined to do everything she could to improve the lives of those living with PD and to find a cure.”
  • Erin McGee:  ”Erin is a Therapeutic Recreation Specialist at Bethesda/Healtheast Hospital in St.Paul, Minnesota. Erin is always upbeat and is such a caring individual. Erin goes above and beyond by bringing treats, keeping abreast of Parkinson information and attending funerals for patients.”
  • Liz Ogren:  ”I am very proud of Liz for her successful effort to launch Pedal and Roll for Parkinson’s. Liz’s goal is to organize and motivate other people with Parkinson’s to ‘get off the couch’ and ‘Pedal and Roll for Parkinson’s.’”
  • Maureen Ruble:  ”Maureen is a PD Superstar who truly deserves this award for her many tireless efforts and the hours she has poured into bringing together caregivers and/or patients so they can share their stories and have helpful conversations.  She has made a BIG difference for many people in Albert Lea, Freeborn County, and Minnesota!”

 

Please join us in congratulating these Parkinson’s Superstars in our community.  We know there are many, many more Superstars who are working and volunteering everyday to make the Upper Midwest a Parkinson’s-friendly community.  Thank you to all of our Superstars!

We hope you have a good pair of comfortable shoes! Today, the first Wednesday of April, is National Walking Day. We have an excellent way for you to celebrate…Parkinsons Moving Day 2012 Twin Cities

Let today be your reminder to register, join a team, start your own team, or simply make a donation for Moving Day Twin Cities 2012 on May 12. Formerly known as “Walk for Parkinson’s Disease,” this event brings participants from all over to join together and support the fight against Parkinson’s disease. This has been a celebrated annual event for more than 20 years.

This year’s location is at Plymouth’s Hilde Center and Park:
3500 Plymouth Blvd.
Plymouth, MN 55447

It’s west of Highway 494 on Highway 55 near Plymouth City Hall.

This event is designed to raise awareness and funds to support the local work of the National Parkinson Foundation Minnesota (formerly the Parkinson Association of Minnesota) and the National Parkinson Foundation.

Join us to walk and enjoy music, food, family photos and Twins Hall of Famer Bert Blyleven and his wife, Gayle. We are adding a Movement Pavilion where you can try Tai Chi, chair exercises, PowerUp and more. We’re also inviting teams from Minnesota companies to participate in Moving Day.

If you’re walking, you may choose from three paths: 2.5 miles, 1.6 miles or .25 miles. It’s a day to walk a little, walk a lot, or move in the pavilion. You may even want to dance or listen to music!

While every attendee will receive a gift for participating, we are asking participants to raise at least $100 for this year’s Moving Day to earn a Moving Day t-shirt.

How else are you planning to celebrate National Walking Day?

We’re excited to share classes, presentations, conferences and more that are coming up in April and May. Our partners at the Minneapolis Clinic of Neurology, Capistrant and Struthers, along with TEVA and the APDA are sponsoring or supporting many of the activities below. (Note: It just got too long to add the sponsors/partners to each event. Please ask who is involved when you call for more information.)

 

What else is happening in April and May? What did we miss? Let us know by commenting below. Thanks. And have fun. There is a lot going on!
Tai Chi: April 2

This Tai Chi class is designed especially for people with Parkinson’s to help with balance, coordination, focus of concentration, physical strength and mental well being. Patients and caregivers/care partners are welcome. The class is 10:30 to 11:30 a.m., Monday, April 2, with orientation from 10 to 10:30 a.m., in the seventh floor conference room at Bethesda Hospital. Register by calling Michelle at 651-232-2258.

 

Gentle Yoga: April 2, 9, 16, 23, 30; May 7, 14, 21

Mats are provided at this weekly Gentle Yoga class for people with Parkinson’s. It’s 10 to 11 a.m., Mondays, at Struthers. The gentle poses are modified for the individual, although participants must be able to stand unassisted and have no significant blood pressure fluctuations as they change positions. Participants report that they experience relaxation and improved balance.  Call  952-993-5495 or 1-888-993-5495 for more information.

 

Clay Class: April 3 and/or April 10

Northern Clay Center artist Lucy Yogerst is leading two free classes, Tuesday, April 3 and/or Tuesday, April 10, in Bethesda Hospital’s second floor therapeutic recreation department. The class is open to all people with Parkinson’s and their caregiver/care partner. Participants do not have to have experience with clay in order to enjoy this fun, supportive and relaxed atmosphere. The class allows participants to work on fine motor skills and hand strength. Register by calling Michelle at 651-232-2258.

Participants in the April 3 class will create a leaf that tells their stories about their experience at the Capistrant Center. The leaf may become part of a Bethesda Healing Tree project at the hospital. On April 10, participants will create a bowl, mug or other functional piece.

 

Movement Boosters: April 3, 10, 17, 24; May 1, 8, 15, 22, 29

This class is a comprehensive, active exercise class designed to work on increased strength, flexibility, balance and agility. It emphasizes larger movements. Participants must be able to stand unassisted and have no significant blood pressure changes.  Call Struthers for more information. 952-993-5495 or 1-888-993-5495.

 

Sing: April 4, 18; May 2, 16, 20

Join the CREATE Singers and enjoy a variety of music (both old and new!) The program guides participants through gentle stretching, posture, breathing exercises and vocal warm ups, followed by therapeutic singing. Call Struthers for more information. 952-993-5495 or 1-888-993-5495.

 

Dance Classes: April 6, 13, 20

Participants of all skill level and ability are invited to try out a dance class, modeled after the Dance with PD program from the Mark Morris Dance Company in Brooklyn, N.Y. Free classes are being held from 10 to 11 a.m., April 5, 13 and 20, at the Maplewood Community Center, 2100 White Bear Ave. N., Maplewood, MN. Feel free to attend the classes alone or with a caregiver/care partner.

 

Tai Chi Chih: April 6, 13, 20, 27; May 4, 11, 18, 25

This simple, relaxing activity promotes flexibility, deep breathing, balance and stress reduction. This intermediate group meets from 10:30 to 11:45 a.m. at Struthers.  A beginners class is also available when there are enough participants. Participants stand during this activity. Call 952-993-5495 or 1-888-993-5495 for details.

 

Speech Boosters: April 11, 25; May 9, 23

Calibrate and maintain use of your strongest voice. Each session includes warm-up exercises and other activities. Call Struthers for more information. 952-993-5495 or 1-888-993-5495.

 

DBS Information Session: April 14

Interested in finding out more about Deep Brain Stimulation (DBS) surgery? Struthers is offering a free information session 9 a.m. to Noon, Saturday, April 14. Call 952-993-5495 to register. Participants will learn how the surgery may help Parkinson’s symptoms, who is a good candidate, tests needed before the surgery, follow-up treatment, individual and family support and more.

 

Caregiver Skills Building: April 17, May 15

On the third Tuesday of each month, Struthers Parkinson’s Center conducts a Caregiver Skills Building Class from 1:30 to 2:30 p.m. You are invited to attend every month or whenever the topic is of interest to you. The April 17 class will discuss “Assisting Movement,” and the topic for May is “Providing Mealtime Assistance.” Call Struthers at 952-993-5495 if you have questions.

 

Education Conference: April 28

“Moving in the Right Direction” with a special focus on hope and well-being is the topic of an April 28 conference and open house at Capistrant Center. The event’s keynote speaker is Laura Li, M.D., Capistrant’s medical director. Registration is from 8 to 9 a.m., followed by the education session and light lunch from 9 a.m. to 1:30 p.m. The center will hold an open house from 1:30 to 4 p.m.

 

Advancing Parkinson’s Session: May 15

“Symptom Management for Advancing Parkinson’s Disease,” presented by Minneapolis Clinic of Neurology doctors Sotirios Parashos, M.D., and Steven Stein, M.D. Wednesday, May 15, at the Olympic Hills Golf Club, 10625 Mount Curve Road, Eden Prairie, MN 55347. The presentation is from 3 to 5 p.m. Registration is from 2:30 to 3 p.m. Light refreshments will be served. Call 651-241-8600 to reserve your spot. The deadline is May 12.

 

Recently Diagnosed Session: May 16

“Symptom Management for People Recently Diagnosed with Parkinson’s Disease” presented by Minneapolis Clinic of Neurology doctors Sotirios Parashos, M.D., and Steven Stein, M.D. Wednesday, May 16, at the Crowne Plaza Hotel and Suites, Three Appletree Square, Bloomington, MN 55425. The presentation is from 3 to 5 p.m. Registration is from 2:30 to 3 p.m. Light refreshments will be served. Call 651-241-8600 to reserve your spot. The deadline is May 12.